In 1989, ACT UP and its Canadian counterparts, AIDS Action Now! and Réaction-SIDA, stormed the Fifth International AIDS Conference in Montreal. Up until that June day, the conference was a members-only event for the AIDS establishment, a chance for scientists to hobnob with their fellow wizards while dispensing wisdom and press releases to beleaguered doctors and a fawning press. PWAs were presented mainly as abstractions, their lives reduced to statistics on spreadsheets, their needs and desires mere sidelights to the noble pursuit of science. Of course, if they wished to make their presence more concrete, they were welcome to do so, for a $500 registration fee.

And then came Montreal. I'll never forget the
sight of our ragtag group of 300 protesters brushing past the
security guards in the lobby of the Palais de Congress, the fleet
of "Silence=Death" posters gliding up the escalator
to the opening ceremony or our chants thundering throughout the
cavernous hall. There we were, the uninvited guests, taking our rightful place
at the heart of the conference. And when PWA Tim McCaskell grabbed
the microphone and "officially" opened the conference
"on behalf of people with AIDS from Canada and around the
world," even the scientists stood and cheered.

But it was only when we refused to leave the
auditorium and instead parked ourselves in the VIP section that
the crowd realized that our action was more than just a symbolic
protest. Despite threats and rumors of a potential "international
incident," we remained in our seats, alternately chanting
and cheering, and giving notice that PWAs were "inside"
the conference to stay. From that point on in the crisis, researchers
would have to make extra room at the table for PWAs and their
advocates.

What we came to see, during a week of raucous
street rallies and dogged challenges to "experts," is
how crucial activism is to keeping that place at the table. I
had my own moment of clarity during a meeting of the International
AIDS Society (IAS) -- the conference sponsors -- at which a list
of future meeting sites including countries that restricted the
travel and immigration of people with HIV was proposed. When I
objected to these sites -- noting that the conference itself had
passed a resolution just that morning instructing the IAS to meet
"only in countries permitting entry of HIV infected travelers"
-- I was told that since travel waivers would be made available
to anyone with HIV wishing to attend any of the conferences, there
was no need to worry about restrictions.

It was as if the only PWAs that the IAS officials
recognized were the ones in the same room with them, and that
if they addressed our specific concerns, they had "solved"
the entire "PWA problem." The idea that the IAS might
be accountable to the larger AIDS community, or that as a "leader"
in the fight against AIDS, it might have an obligation to take
a stand against discriminatory policies, seemed to be beyond its
officials' comprehension. We were there to expand their horizons.

But activists had come to Montreal to influence
more than just policy. We were there to hold science itself accountable
to PWAs -- to demand, in the words of ACT UP's "National
AIDS Treatment Research Agenda," that "people with AIDS
and their advocates participate in designing and executing drug
trials," and that research be driven by people's needs and
not just by the interests of drug companies. This meant broadening
research priorities to include treatments forthe opportunistic
infections that actually killed PWAs, and ensuring that the full
range of people with HIV be enrolled in the studies. The drug
trials themselves needed to be designed for the real world --
"prophylaxis permitted, placebos avoided, efficacy criteria
and end points humane" -- and people intolerant of standard
therapies and/or ineligible for ongoing clinical studies still
had to be given access to these experimental treatments.

Although the "Treatment Agenda" was
one of the most influential papers of the conference, overall
reaction to the activist presence was polarized. While many praised
us for breathing real-life issues into the rarefied air of scientific
symposia, others complained about our confrontational tactics
and accused us of "introducing politics" into a scientific
conference. Some scientists even suggested that future conferences
be split into separate "scientific" and "social"
issue sessions.

But those suggestions were resisted, and the1990
International AIDS Conference in San Francisco found activists'
concerns even more firmly entwined with those of the conference.
Scientists joined activists in denouncing the restrictive U.S.
travel policies that had forced an international boycott of the
AIDS conference itself; ACT UP member Peter Staley was a keynote
speaker; and later thousands of conference participants took part
in an AIDS Unity March through the streets of San Francisco. Although
there were still disagreements between activists and scientists,
we now appeared jointly, if warily, on panels. Angry demonstrations
were held daily outside the convention center, addressing such
issues as the "crumbling San Francisco model of AIDS care,"
but the atmosphere inside, while tense, remained cordial, with
protests held to a minimum (save the closing-day shouting-down
of U.S. Health Secretary Louis Sullivan -- who was, in any event,
a political figure and not a scientist). In fact, Larry Kramer's
"call to riot" over the disastrous state of AIDS research
notwithstanding, the big story of the conference was the emergence
of an "uneasy alliance" between activists and scientists:
Both sides agreed to disagree on specific issues while recognizing
the larger benefit of finding ways to work together.

Today's AIDS conferences find the communities,
activists and scientists working together more closely than ever.
Although the perceived community crisis that fostered ACT UP has
waned, the group's influence endures as many who began at the
barricades now have a seat at the the AIDS establishment's table.
Of course, if we are to remain effective inside the system, it
is imperative that we stay true to the issues and demands that
brought us to Montreal in the first place -- the real day-to-day
lives of people with HIV.